Waiting

[Sara Angela]

I keep waiting on the phone to ring. The nurse called last Thursday telling me that I was JCV + and the Dr. wanted me to start on Gilenya, but wanted to talk to me on the phone first. I know she was at a MS conference & wasn't in the office until Monday. I e-mailed through their portal yesterday asking if she forgot me and got no response. I'm tired of WAITING! I feel like I should be "doing" something, but can't until the Dr. starts the process. Sigh... Sorry for the vent!

Sara

[MarkLavelle]

I think we all get the urge to be *doing* something, but the reality is that a few days (even weeks) before starting a DMD probably won't make any difference in outcome for the vast majority of people.

[lisa1014]

Have you already been on something? I know I had to wait several weeks between stopping and starting a new med. I was frustrated too because the Dr. office did not explain that to me I had to learn it from a friend who has had ms a long time.

[Sara Angela]

I was on Rebif for four months. Then, had to wait to get the JC Virus test over a week. I had to wait over two weeks for that results. Then, the nurse calls saying I'm + and the Dr. wants me to start Gilenya, but will call in a few days. Now, over a week later still no call.

I really didn't pray for patience! I guess God thinks I need more!

Sara

[Tomjadg]

I did Rebif for 7 months with a steady decrease.
I had to wait a month to start Ty which is normal.
As most people, I am JCV+, but am not really concerned.

The first year is safe, and I am into 15 infusions with a brain MRI every 3 months now.

At the 2 year point, I plan to switch to BG-12 for the PML protection.
What a way to live, huh?

[Sara Angela]

Yep... I was getting very upset with the Dr. not calling. Still no call... I was watching Joel Osteen this morning about being thankful for unanswered prayers. I trust my Lord has better plans, than what I had! I will keeping waiting knowing he knows what is best for me!

Sara

[Sara Angela]

I finally heard from my Dr. She said she had been out of the office for a week.

She said she has talked to the drug co. to see about getting help paying for the pre-test stuff.

Sara